People living with more advanced MS develop special needs.
Family and friends often provide care and become a major source of assistance for people with MS as their disease advances and disability progresses. In addition to emotional support, caregivers may begin to informally provide long-term care services at home. When needs become too great at home, families begin to consider long-term care in a nursing home.
What is long-term care?
Long-term care covers a range of services and supports that help to meet personal care needs.
Most long-term care is not medical care, but rather help with the basic personal activities of daily living (ADL), such as bathing, dressing, eating, or using the toilet. Family members may also help with instrumental ADLs such as transportation, shopping, meal preparation, housework, managing money, taking medication, or responding to emergency alerts such as fire alarms.
Long-term care is something that is provided on a continuum from family members to professional caregivers and from community services to institutional care. Nursing home care is the most expensive and restrictive way to provide long-term care. Most people with MS want to remain in their own homes for as long as possible before considering a nursing home.
How do people with MS view nursing homes?
Probably the most important way to delay or prevent needing nursing home care is to identify precursors to nursing home entry for people with advanced MS. Recent research that aimed to identify those critical precursors engaged focus groups made of people with MS (n=36) and family members (n=17). Participants either had MS or provided informal care to a person with MS already living in a nursing home, were at risk of entering a nursing home, or thinking ahead to the possibility of needing a nursing home in the future.
The people living with MS were primarily female (n=29) with average age 61.4 years (range 30-86). Seventy-eight percent lived with at least one other person and only two worked part time. The others were retired or unable to work. Family caregivers included eight females and nine males with average age 65 years (range 51-79). Caregivers included fourteen spouses, one parent, and two non-family caregivers. Only two (twelve percent) of the caregivers worked full-time as the others were retired or unable to work.
Nursing homes equal the end of the road
A complex interplay of emotional, social, and health-related factors affect how persons perceive nursing home care.
The dominant perspective of study participants was that nursing homes are facilities that individuals with MS enter when there is no other option; when demands upon family members and caregivers have become unmanageable. It was seen as a last resort, a resignation, that patients do not enter willingly. In one focus group discussion, assisted suicide seemed to be a preferable alternative. These attitudes contribute to the situation where patients enter a nursing home only when there is a crisis.
Nursing homes open doors and opportunities
However, there were some dissenting opinions in the groups. Two study participants currently living in a nursing home expressed satisfaction with their level of freedom, flexibility, and independence. “I’ve been there for a while…I have my room. I come and go as I please. I don’t have a buzzer when I go out the door that’ll squeal on me.”
Others expressed that there is a time and place where entering a nursing home makes sense, especially when concerns include complex care, safety issues, and social isolation. For these individuals, going into a nursing home does NOT mean that life is over. It can actually open up doors and offer ways for people to stay engaged and do meaningful activities.
What type of long-term care services might delay nursing home entry?
Most long-term care is provided at home and begins with a family member or friend who is unpaid. As the need for care increases, the burden may become too great for the informal caregiver to sustain alone.
Home care support may be provided by engaging a nurse, home health or health care aide, and/or therapist to come to the home. Outside community support services include adult day care service centers, transportation services, and home care agencies that provide services on a daily basis or as needed. Each of these support services can supplement care at home or provide time off for family caregivers.
Facility-based programs offer greater options. Independent living or retirement communities may provide meal services, basic housekeeping and laundry services, and access to exercise facilities and social activities. Assisted living facilities provide personal care support services such as meals, medication management, bathing, dressing, and transportation. And finally, full resident nursing homes offer the most comprehensive range of services, including nursing care and 24-hour supervision.
See More Helpful Articles:
Perspectives of People with MS and Their Family Members on the Need for Nursing Home Care. Presentation by Marcia Finlayson, PhD, at Consortium of MS Centers Conference, June 2, 2016, National Harbor, Maryland.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.